When Caregiving Takes You To The Limit

Writer Ellen Margulies

By Ellen Margulies

Last fall, everything changed for my family.

My father came down with a cold one Saturday. Within a week, he had developed pneumonia. Followed by a serious lung infection. Followed by blood transfusions and ultimately chemotherapy as the leukemia his body had harbored for years suddenly roared to life. In between his hospitalizations, my mother took a tumble at work and fell flat on her face. She ended up in the hospital overnight. Within two weeks, this woman who had spent her working life in retail, climbing up and down ladders and standing on her feet for eight hours at a stretch, could no longer walk or even feed herself without assistance. She had a spinal cord injury, aggravated by the fall but caused by a degenerative neck disease that left her vertebrae crumbling in one on another and crushing the pathway between her brain and her body. Without major surgery, she faced near total paralysis. Even with the surgery, doctors  couldn’t guarantee how much mobility she might regain.

My mother’s condition has meant months in the hospital and a rehab facility (a.k.a. nursing home). My father’s situation has meant he couldn’t even visit his wife of 52 years because his immune system is so compromised that his oncologist didn’t think he could risk it.

So within the past six months, everything has changed. For my parents, the changes have meant they must endure the indignities and outrages of age and illness and infirmity. For my siblings and me, it has meant something different.

Did You know?

Sixty-one percent of caregivers are women.Source

Fifty-nine percent of informal caregivers have jobs in addition to caring for another person.Source

About 75 percent of caregivers who report feeling very strained emotionally, physically, or financially are women.Source

Life has taken on a surreal quality. I find myself surfing these crazy ups and downs. There are days when we think some surgical procedure or treatment is changing the big picture. Days when I drive out to my father’s house for lunch and he actually eats. Days when I visit my mother in the hospital and she’s chipper and upbeat. Then there are those other days – days when my father’s chemo treatments have to be delayed because his white count is out of control and he has to get a blood transfusion instead, days when my mother becomes uncharacteristically despondent as she faces yet another post-surgery complication that requires yet another procedure.

Days when I realize that she’s 76, he’s 78, and there’s only so much better they’re going to get. Those days fill me with dread.

I find myself feeling guilty, angry, resentful, afraid. Although my sisters and I have divided up the visiting and chores, we are all exhausted. I struggle with my own distaste of the gritty low-down ugliness of tubes and IVs and bodily functions and a thousand other things I never wanted to think about, much less witness.

I use different M.O.s with each parent. With my father, I am relentlessly cheerful as we chat daily about politics and the economy and indulge in gallows humor about his dwindling frame. My father is not an emotional person; I know he’s having a bad day when he’s literally too tired to talk for more than five minutes, when he tells me he loves me before he hangs up the phone. With my mother, I bounce between inane chatter, picking a fight or complaining about my own petty problems to give her something to prod me about. She is happiest when she has someone to care for, some project to oversee. I feel like it helps her in some small way to think beyond the hospital walls or the machines she’s hooked up to when I can BE that project.

Arguing is sort of part of our language. Mothers know how to push buttons – they’re the ones who created them, right? Although, really, it’s just part of my stubborn refusal to admit that I will have to be more of a parent than a child to her, that our roles are going to continue their reversal, that things will truly never be the same again. I always feel tremendous guilt afterward, of course. What kind of person picks a fight with a woman in the hospital? Not a very good one.

The other thing that has changed in these calamitous months has been my view of myself. I do not have the right stuff to be a patient unselfish caretaker. I might spend all day Saturday with my father, but not all day Sunday, too. I’ll visit my mother in the hospital after work a couple of times during the week, but not every night. I cannot avoid comparing myself to friends in similar situations. J. fed her and bathed her mother and nursed her for years. She never questioned whether she should do it, never agonized over the decision – for her, it was simply a given. My friend G., who was unsuccessful in convincing her mother to move closer, makes a 4-hour round trip to care for her emotionally fragile mother every weekend. Every. Weekend. Going on something like 10 years now.

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I have had to face the fact that I cannot be that devoted. It is an ugly thing to realize about yourself, but as much as I love my parents, there’s only so much of my life I’m willing – or able – to give up. My own emotional and physical health has taken a beating from the stress of this situation. Since my parents have fallen so ill, I’ve been strapped to a heart monitor and checked for tongue cancer and suffered from chronic insomnia and fatigue. The diagnosis is the same for everything: Stress.
But I’ve been lucky. I have siblings to share the load. My boyfriend, my friends, my coworkers have been unfailingly supportive, as if I were the one who needed caring for. I don’t know what happens when someone doesn’t have the support system I do.

On my own better days, I try to remind myself that I cannot control my parents’ situation. I know it is normal to feel angry and afraid and all of those other emotions I shouldn’t even admit to, much less experience. And although I seem to be unable to literally give it all I’ve got, I do know that I am giving all I can. Either way, it simply wouldn’t be enough.

Q: I feel like I am always running to take one of my parents to the doctor. Help!

Expert Elizabeth Moss, LPN answers your questions.

All the above information has been reviewed by this week’s expert.

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